How I put ME/CFS into remission....& even better

[perrier]

Looks like Mutaflor contains corn-derived ingredients, which could cause an allergic reaction.

I've used Symbioflor, but it did not restore my microbiome. It didn't hurt, but it didnt help, either. I ordered it from Germany and got it shipped to the US.




This is on their FAQ:

"Are clinic personnel medically trained / qualified?

FMT is currently at the investigative stage and to the most part, microbiologists and academics are carrying out the research work into the effectiveness and relevance of the procedure with a range of conditions. The United Kingdom medical authorities do not classify FMT as a medical procedure, although once the research has reached an advanced state with sufficient positive trials data, medical adoption is likely to follow.

In preparation for medical adoption, treatment at the Taymount Clinic is carried out by trained FMT practitioners with nutritional experience."

Yes, Learner, the chap is a microbiologist by training. I can’t recall what his wife was. Neither had anything to do with medicine. Interesting that the paragraphs you site is now on the website. They are benefitting from a loophole in British law.

 

[pamojja]

Spoiler

Last night I dreamed I ate a stew with poo in it, even found it good enough to improve my microbiome. Guess I have to get less fascinated by that whole matter.

 

[SherDa]

Spoiler

Last night I dreamed I ate a stew with poo in it, even found it good enough to improve my microbiome. Guess I have to get less fascinated by that whole matter.

How about some baby poop sausage stew?

https://www.livescience.com/43465-baby-poop-sausage-probiotic.html

 

[perrier]

@perrier I am so sorry to read about what happened to your daughter and it is criminal IMO. I am hoping others will read your post in the future and it will prevent someone else from going through the pain and suffering that you and your daughter went through with that clinic. How could they not even have a GI doctor on stand-by?!!

Dear Gingergrrl
This experience and others on this painful journey have shown me that there are folks out there who will live off young people who are most desperate most sick, most suffering in our society. It’s not a good thing to have to face this reality. This illness is extreme in its severity, and to think that people would profit from this population of young people can really make me look at humanity in a very disappointed way.

 

[Kathevans]

Omg. I am so weary. I recall seeing an article in the NYTimes Science section back in 1998--at my Native American Polarity therapist's office (don't laugh, now, it was just another modality and he was a former bio-chemist who'd studied with Linus Pauling at UC, San Diego) about the gut holding the microbes that kept the body well. He'd healed himself from bed-ridden to up and running (and remains so to this day) by taking huge doses of probiotics, and going on the restrictive no sugar/fructose, low carb diet. But that didn't work for me for whatever reason...

And I knew a decade ago when I first read about the development of FMT that this was what I needed. Or some variation of it.

And so we wait.

 

[kangaSue]

How about some baby poop sausage stew?

I've seen a few accounts of people using baby poop for FMT because they couldn't easily access any other healthy stool donors. While babies don't have a fully developed microbiome like adults, their poop is high in short chain fatty acids which are essential for good bowel health and baby poop can enhance SCFA in adults.
https://www.sciencedaily.com/releases/2018/08/180823092026.htm

 

[PinkPanda]

i feel sorry for your daughter..

 

[Hip]

New clinical trial in Norway on FMT for ME/CFS detailed here. That should be interesting. Unfortunately though they are using the Chalder Fatigue Scale, which has been criticized for being unreliable.

 

[Murph]

New clinical trial in Norway on FMT for ME/CFS detailed here. That should be interesting. Unfortunately though they are using the Chalder Fatigue Scale, which has been criticized for being unreliable.

Sponsor:
University Hospital of North Norway

Collaborators:
The Research Council of Norway
Quadram Institute
Umeå University
Cornell University

Information provided by (Responsible Party):
University Hospital of North Norway

Brief Summary:
This is a single-center stratified (on gender and donor), block randomized, placebo-controlled, parallel group trial with 12-months follow-up of 80 chronic fatigue syndrome/encephalomyelitis (CFS/ME) participants. Participants will be randomized to treatment by preprocessed thawed donor fecal microbiota transplant or preprocessed thawed autologous fecal microbiota transplant. Primary endpoint is the efficacy of FMT at three months by the Chalder Fatigue Scale. The investigators will use patient reported outcomes for primary and secondary outcome mesures.

Previous studies suggest that a dysbiosis of the gut microbiota may be a key feature in CFS/ME. We hypothesize that

A: CFS/ME is caused by a dysbiosis in the gut flora causing barrier leakage of bacterial products, a low grade systemic immune activation and disturbances in the host energy metabolism.

B: Recovery of a normal gut flora by fecal microbiota transplantation (FMT) alleviates symptoms and may even induce remission of CFS/ME.

This project aims to determine if there is a true cause and effect relationship between a dysbiotic gut flora and CFS/ME by testing if treatment of the observed dysbiosis by FMT also can resolve CFS/ME symptoms. In this process, collection of blood, fecal, and urine samples before and after FMT will open the possibility to explore the relationship between the gut flora, immune response, host energy metabolism and CFS/ME using technologies of microbiomics, metabolomics and immunological characterizations for a better understanding of the pathobiology of CFS/ME.

 

[Hip]

preprocessed thawed autologous fecal microbiota transplant.

That is an interesting concept, using your own fecal material to give yourself a fecal microbiota transplant (autologous means cells or tissues derived from the same individual).

 

[MeSci]

That is an interesting concept, using your own fecal material to give yourself a fecal microbiota transplant (autologous means cells or tissues derived from the same individual).

That's the control, isn't it?

'Participants will be randomized to treatment by preprocessed thawed donor fecal microbiota transplant or preprocessed thawed autologous fecal microbiota transplant.'

 

[Murph]

That's the control, isn't it?

'Participants will be randomized to treatment by preprocessed thawed donor fecal microbiota transplant or preprocessed thawed autologous fecal microbiota transplant.'

Yes it's the control - and an ingenious way of blinding the trial!

I wonder if the treatment group will get material from just one person. I have read that when they stratify certain FMT trials by who the donor was, they find the donor matters a lot. They say some people make "super donors".

If the norwegians use a mixed group of donors in this MECFS trial i hope they track information on each of them.

(here's a clinical trial in colitis that aims to find super donors: https://clinicaltrials.gov/ct2/show/NCT03110289)

 

[Hip]

That's the control, isn't it?

Ah yes, I think you're right; the penny did not drop on that one.

Though I wonder if there might be some clinical effect even with your own microbiota, if the material was given orally such that it travels through the small intestine? If someone had SIBO due to the colonization of the usually relatively sterile small intestine by possibly just one or two particular bacterial species, then maybe their own fecal material (which presumably would contain a wider spectrum of bacterial species) might have benefits for this SIBO. Some probiotics can help SIBO, so perhaps one's own microbiota might do so as well.


Actually I've just been reading a bit more about SIBO as a result of this thread, a condition which may be misdiagnosed as IBS. It's interesting that there are three types of SIBO, which are detected by the gases in your breath:

• Hydrogen-dominant SIBO (the most common)
• Methane-dominant SIBO (often involving constipation)
• Hydrogen sulfide-dominant SIBO (which cannot yet be detected on commercial SIBO breath tests).

Methane-dominant SIBO actually involves the colonization of the small intestine with archaea, a different domain of life to bacteria. Like bacteria, archaea are very abundant in the biosphere, but it is unusual for archaea to be linked to human disease.


One 2004 study suggested that 84% of IBS diagnoses are actually SIBO, based on the results of a breath test on IBS-diagnosed patients. However, apparently a more recent study has cast doubt on that figure:

"A more recent study found that some people with IBS give false positive results for the SIBO breath test.

The reason is that what they really have wrong with them is the time it takes for stuff to go from the stomach to the bowel is too fast. So when we give them lactulose for the breath test, it reaches the bowel too quickly, which causes them to excrete hydrogen in their breath, so we get a positive result.

My estimate would be that in fact no more than 10 per cent of IBS sufferers actually have SIBO."

says Dr Ian Penman.

Source: here

I've got IBS-D symptoms, though have never been tested for SIBO, which potentially might be the cause. But given that as mentioned above, some people with IBS get false positive results on a SIBO breath test, I am not quite sure how those with IBS symptoms can test for SIBO in a way that avoids false positives.

 

[wigglethemouse]

I am not quite sure how those with IBS symptoms can test for SIBO in a way that avoids false positives.

It all comes down to interpretation of the test graph.

There are normally two peaks if you test for long enough, one for the small intestine and one for the large. However the test normally stops at 3 hours. If you have a fast transition time and no SIBO then the graph may look like a patient with SIBO and a slow transition time.

However, if you have two clearly defined peaks, and the first is much higher than the positive/negative limit, then you most likely have SIBO.

Test is easy to do, so as long as you can get a copy of the results from your doctor you can use it to decide if you want to proceed with the 2 week antibiotic course of treatment.

In the US Genova Diagnostics offers a home testing kit that a doctor can order. I believe the cost is around $200.
https://www.gdx.net/product/bacterial-overgrowth-of-the-small-intestine-sibo-test

If on looking at the graph you feel it is borderline or negative then another cause of IBS-D to look into is MCAS, resulting in an immune reaction to food. Treatment for that is Cromolyn Sodium.

 

[Hip]

In the US Genova Diagnostics offers a home testing kit that a doctor can order. I believe the cost is around $200.
https://www.gdx.net/product/bacterial-overgrowth-of-the-small-intestine-sibo-test

Am I right in thinking that in this home test, the gas from your breath is captured in test tubes which you then send away for analysis?

There are normally two peaks if you test for long enough, one for the small intestine and one for the large.

That's interesting, so I am right in thinking that the sample report for the Genova Diagnostics SIBO test, which only shows one peak, located in the large intestine portion of the graph, would be a negative for SIBO?

 

[wigglethemouse]

That's interesting, so I am right in thinking that the sample report for the Genova Diagnostics SIBO test, which only shows one peak, located in the large intestine portion of the graph, would be a negative for SIBO?

In the sample report you link to it calls the result positive. The numbers start to increase between 60-90mins, and they take the 90mins value. In the same report it states

A normal transit time of lactulose (10 g) in healthy fasting patients from the mouth to the junction between the small and large intestine (oro-cecal transit time, or OCTT) is approximately 90 minutes. In general, transit times have been found to vary in humans. Given such findings, transit time should be taken into consideration when interpreting breath testing.

A rise of H2 of =20 ppm over baseline in the first 90 minutes of testing is positive for SIBO.¹
• The hydrogen result is the difference between the baseline hydrogen (S1) and the highest hydrogen finding among S2, S3, S4 or S5. The result does not take into account actual collection times. It is expected that the patient followed recommended collection times.
• A rise of H2 of =20 ppm over baseline in those samples collected after 90 minutes maybe positive for SIBO in patients with slower transit time or constipation.

I remember reading this paper where graph B shows a positive hydrogen test. The paper describes the double peak and the difficulty in interpretation due to different transit times.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3155069/

In my case I had a very small hydrogen peak <20 at 40mins which then decreased and then numbers went above 20 at 2hr 15mins. I interpreted this test as a negative and a fast transition time. Others interpreted it as positive and a slow transition time. In the past I was told I had a very fast transition time during a barium meal test so that's why I came to the conclusion that I did.

EDIT: Additional info on the hydrogen breath test for SIBO on Wikipedia
https://en.wikipedia.org/wiki/Hydrogen_breath_test

 

[wigglethemouse]

Am I right in thinking that in this home test, the gas from your breath is captured in test tubes which you then send away for analysis?

Yes they are test tubes. Here are the instructions from the website
https://www.gdx.net/core/domestic-kit-instructions/SIBO-sci.pdf

There is also a video of instructions on the clinicians tab
https://www.gdx.net/tests/prep/sibo

 

[kangaSue]

Though I wonder if there might be some clinical effect even with your own microbiota

Interestingly enough, one study into using FMT for C diff found that some in the autologous control group were also cured. Further testing in these patients found thus;
[To investigate why this occurred, the researchers used Illumina-based next-generation sequencing to determine the bacterial communities. They discovered that patients who were cured by the autologous transplant had an abundance of Clostridium Xia clade and Holdemania prior to transplantation.

This abundance of microbiota significantly increased after transplantation compared with heterologous transplant and pre-transplant samples, according to the study.

Further analyses showed that the microbiota of patients cured by the autologous transplant was drastically different compared with the patients cured by heterologous transplant.
The investigators also found that the donor’s fecal microbiota did not remain the same, but changed over time.

"As opposed to what we thought, complete engraftment of microbiota is not required to be cured," Dr Sadowsky said. "The study provides insight into which microorganisms are the most important for curing a patient and may allow clinicians to better tailor therapy, by improving the donor material to facilitate a more rapid, effective, and lasting cure."]

https://www.ajpb.com/news/new-methods-to-improve-fecal-microbiota-transplantation-discovered

 

[Hip]

Interestingly enough, one study into using FMT for C diff found that some in the autologous control group were also cured.

So maybe then autologous FMT (using your own fecal material) might have some therapeutic effect? At least with such a procedure you will not have to worry about finding a donor, and will not have to screen that donor for viral infections.


As I was trying to figure out why autologous FMT might help, it occurred to me that by orally administering your own fecal material such that it passes along your small intestine (which is usually relatively sterile), you will be presenting your own bacteria to your Peyer's patches, which are located in the ileum, the final section of your small intestine.

The function of the Peyer's patches is to detect harmful pathogens in the food we eat, and then direct an immune response against these pathogens. Peyer's patches are to the intestine what the tonsils are to the throat. Peyer's patches are part of the gut associated lymphoid tissue (GALT).

Thus if via autologous FMT you are presenting your own pathogenic bacteria to the Peyer's patches, conceivably this might help stimulate a strong immune response against these bad bacteria. So maybe that's why autologous FMT is helpful?


Dr Chia says that the Peyer's patches can be chronically infected with enterovirus in ME/CFS, and I wonder if this infection compromises their function? If the Peyer's patches are not working properly, perhaps this might lead to gut dysbiosis.

 

[kangaSue]

Dr Chia says that the Peyer's patches can be chronically infected with enterovirus in ME/CFS, and I wonder if this infection compromises their function? If the Peyer's patches are not working properly, perhaps this might lead to gut dysbiosis.

I didn't know of this connection so thanks for that.

I was actually looking to post a different paper above that I had read about autologous FMT also achieving remission in Crohn's Disease but can't track it down so maybe it was just something anecdotal I came across.

It's interesting that lesions of Crohn's Disease occur in segments that suggest the distribution of Peyer's patches and tends to be worse in the terminal ileum where, as you mentioned, Peyer's patches are more prevalent (in the distal ileum).

Also of note is that some cells of the processes of Peyer's patches then pass to the mesenteric lymph nodes where the immune response is amplified. It's only in recent years that it's been discovered that mesenteric lymph fluid can be a transport mechanism for pathogenic bacteria that is not detected in blood samples. Maybe drawing a long bow but could then a flow on from that be one of a lesser potency of sepsis?